Having completed 4 rounds of FCR on the FLAIR trial I unfortunately been hospitalised on the last 2 occasions(rounds 3+4) with some some form of unspecified infection, temperature 38.2 on admission and subsequent blood results showing neutrophils at 0.2-0.4 on both admissions. I had round 4 on 04 May 2016 and by the Saturday through to Sunday I was poleaxed and could hardly get off the bed . My temperature was bouncing around but hadn't hit the 38.0 figure.It subsequently did on Thursday 12th just gone and was hence admitted and put on IV antibiotics both times
I was discharged today and the consulting haematologist who signed me off said that it will be worth reviewing my current situation with the Professor prior to my pre chemo appointment as there seems to be little statistical benefit from rounds 5-6 and also the chance of greater toxicity, bearing in mind that I have been hospitalised on the last 2 occasions.
Could I kindly ask the community for their thoughts.
Best regards,
Jack...
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jackhammer
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I had a very similar experience. My consultant initially postponed round 5 at the end of March but has now cancelled any further chemo for me, based on my very low blood counts across the board. I've had one platelets infusion and numerous blood transfusions. My neutrophils also fell to 0.2 and my platelets to 19! Very, very slowly my counts are beginning to climb out of the danger zone but as recently as last week my neutrophils were again under 1! So, all in all I'm glad that chemo is over for me. But as everyone says, we are all different, so you may recover enough for round 5 and 6. Wishing you the very best of luck. Hoping my experience comforts you that you are not alone!
Nice one Kate and many thanks for getting back to me and glad to hear that you're now on an upward curve. You and me both are SLL so as we know the blooddrarely gives us the picture. But rightly or wrongly I got the distinct impression from the discharging consultant (emminent), that there was very little if any in the difference for these extra 2 rounds particularly if like you and I , been having a bit of a rough ride..
My consultant told me in his experience it is rate for patients to make all 6 rounds! Scary though. Five weeks after chemo 4 I felt raised lymph nodes. Hoping it was just a response to infection and they went down again! My consultant is not concerned and I trust him. BUT he's not living in our SLL shoes!
Yep, Its going to be one of those things the blinkin body checking, at least until theres's a bit of distance between treatment and a bit of water under the bridge. Another one of the consultants told me that "as Doctors we make quite light of the treatment for obvious reasons but let me tell you the stuff we are giving you would flatten a 20 year old let alone a guy of your age" lol11
As my friend Kate says your experience is not uncommon I spent several weeks hospitalised during treatment with nuetropenic sepsis and rashes.
I ended with only three rounds of FCR after which the Nuets failed to recover and concern was expressed about further treatment having a negative effect on the bone marrow.
It's been 12 months since May last treatment and all seems to be going well.
Appointment today with consultant so will know an up to date picture this afternoon.
If you finish on four cycles treat it as a bonus then join us in the remission club hopefully for a long time!
Sorry to hear you have been having a very rough ride. Hopefully your bloods especially the neuts will pick up and you will find you won't need more treatments.
Thank you Bub and hope all is good with you. 2 nights on a triage triage trolley prior to being able to get on to the ward would buckle the best of us!!!
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FLAIR Trial - ErnieUK Final Round 6 FCR Surprises
Has anyone had a similar situation?
